Go to work little t cells

my T cell transfusion just happened. "Go to work you little sweethearts. There is much for to do"

"Where no man has gone before"

Well, today we leave for Houston.  It's hard to leave our children but we are grateful and our older son Jarom and his wife Natalie are willing to come and stay with them.  Still, we will miss them.

"Where no man has gone before"

On the other hand, we are full of hope that this treatment will finally bring us the answers that we have prayed for these last three years.  Conventional cancer treatments have simply proved ineffective.  But, they did save my life this long so I am not complaining.  The research that they are doing in Baylor simply wasn't available 3 years ago.

I don't know why my journey has been so convoluted.  Honestly we expected to be cured the first time around.  We had faith.  I don't always understand God's ways.  I guess that is why they call it faith.  Even though I don't understand I still trust Him.

Sometimes we are all so quick to judge our lives with the perspective of a moment.  I think that God sees a bigger picture.  I have a story that I heard once that I really like.  Here it is:

One day in late summer, an old farmer was working in his field with his old sick horse. The farmer felt compassion for the horse and desired to lift its burden. So he left his horse loose to go the mountains and live out the rest of its life.Soon after, neighbors from the nearby village visited, offering their condolences and said, "What a shame.  Now your only horse is gone.  How unfortunate you are!. You must be very sad. How will you live, work the land, and prosper?" The farmer replied: "Who knows? We shall see".Two days later the old horse came back now rejuvenated after meandering in the mountainsides while eating the wild grasses. He came back with twelve new younger and healthy horses which followed the old horse into the corral. Word got out in the village of the old farmer's good fortune and it wasn't long before people stopped by to congratulate the farmer on his good luck.  "How fortunate you are!" they exclaimed. You must be very happy!"  Again, the farmer softly said, "Who knows? We shall see."At daybreak on the next morning, the farmer's only son set off to attempt to train the new wild horses, but the farmer's son was thrown to the ground and broke his leg.  One by one villagers arrived during the day to bemoan the farmer's latest misfortune.  "Oh, what a tragedy!  Your son won't be able to help you farm with a broken leg. You'll have to do all the work yourself, How will you survive? You must be very sad".  they said.  Calmly going about his usual business the farmer answered, "Who knows? We shall see"Several days later a war broke out. The Emperor's men arrived in the village demanding that young men come with them to be conscripted into the Emperor's army.  As it happened the farmer's son was deemed unfit because of his broken leg.  "What very good fortune you have!!" the villagers exclaimed as their own young sons were marched away. "You must be very happy." "Who knows? We shall see!", replied the old farmer as he headed off to work his field alone.As time went on the broken leg healed but the son was left with a slight limp. Again the neighbors came to pay their condolences. "Oh what bad luck. Too bad for you"!  But the old farmer simply replied; "Who knows? We shall see."As it turned out the other young village boys had died in the war and the old farmer and his son were the only able bodied men capable of working the village lands. The old farmer became wealthy and was very generous to the villagers. They said: "Oh how fortunate we are, you must be very happy", to which the old farmer replied, "Who knows? We shall see!" 

I will try to keep this blog updated as we progress through treatment.  Thank you again for your prayers, your faith and your friendship.  They mean the world to us.

Cast off the anchor ropes, raise the sails!

Monday was my last chemotherapy ever I hope.  Only time will tell but I can hope.  I have been bald so many times now I have almost forgotten what I look like with hair.

As is often the case, the full impact of the chemo doesn't hit you until a few days later.  So, yesterday was a hard day physically.  I just felt run down from the moment I got up.  Everything hurt more and my wounds just wouldn't dry up.  When I have a hard day physically it makes it hard to have a good day emotionally.  They go hand in hand whether I like it or not.  I came home at lunch just dragging.  Sweet JoLynne got home shortly after I did.  I'm a little embarrassed to admit that I had been at home crying, but oh well.  JoLynne is amazing.  She never scolds me, just puts her arms around me and tells me "it's going to be alright, it's okay to get discouraged"  I don't pretend to understand why things are the way that they are but when JoLynne puts her arms around me I can physically and emotionally feel the stress flow out of me.  She has something magical about her.  I am so grateful!  The problems feel the same size but somehow I feel bigger with her there by my side

Ah, picc lines, so much

Today I feel much better.  I just woke up feeling better.  They took out my picc lines today.  After four months I was more than ready to be done with them.  It so so strange to have them pulled.  It doesn't hurt but the lines are pretty long.  They kind of just "reel" them out of your vein.

My treatment date in Houston has been moved up to December 29th.  The researchers called and said that my T-cells grew very nicely and are all done.  They have 12 batches of genetically modified T-cells sitting in the freezers, waiting to be injected back into me.  All that is lacking is the FDA to come and sign off on the batches and a free hospital bed.

May God's wind lead us safely there. 

With my picc line removal and the treatment date moved up I feel like a ship casting off.  "Cast off the anchor ropes and raise the sails"  There is something reassuring about being tied to an anchor rope but the reality is you never get to your destination until you lift the anchor.  Raising the sails has risk but the time comes for taking risks if you want to get anywhere.  I'm ready!

Another blog

Isn't language interesting.  Twenty years ago if I told someone that I was going to blog someone would have probably handed me a bucket to catch it in.  Now it means something completely different, or at least I hope so.  Hopefully what I write is more than verbal vomit.

This last Monday I had blood collected for the clinical trial in Texas.  I came into the doctors office holding this fairly large box full of empty vials and handed it to one of my sweet nurses.  She took one look and said, "Wow, that is a lot of blood."  About two thirds of the way through she couldn't get any more to come.  I wondered if I had run out but she managed to pull a little more and finish the job.  I'm still here blogging so I guess that something is still circulating in there.

Kids in Oregon after we abandoned them

Monday afternoon I had a "PEG tube" put into my stomach.  I have really been struggling to swallow. I just can't direct traffic in the back of my throat.  Sometimes the food goes down, sometimes it gets stuck, sometimes it comes out my nose, sometimes it goes into my lungs.  They think that is the reason I got pneumonia this last week.  Sometimes you just have to laugh.  A few days ago I had just eaten dinner and had run over to a friends to take them some tomatoes.  As I was getting out of the car I sneezed and out popped a carrot, not a small one.  I just looked at that and thought "Oh brother".  Anyway, with this tube directly into my stomach I can still keep nourished and not have carrots popping out of my nose.

It was an emotional day for me.  I remember looking at that box as we sent it off to Texas via FedEx thinking, "Okay God, now you have my blood, turn it into a miracle."  It seemed so final.  Then getting the PEG tube seemed like another admission to my declining health.  Arghh, I hate that.  I just kept repeating in my mind, "prepare for a miracle Eric"  We are full of hope and we trust God.  Sometimes I just think "I believe, help thou my unbelief."  It's hard to have perfect faith all of the time.

My angel wife and our granddaughter

I talked to the lead scientist today from Baylor.  She is very nice.  It sounds like treatment will probably begin January 5th.  It will take that long to engineer the cells.   Probably we will need to stay in Texas for about 6 weeks.  This is a phase one trial meaning they are testing safe doses.  She told me that it appears that the initial dose that they had thought to start with appears safe so she is going to jump me up to the next dosing group right from the start.  That is good news to me.  She also said that my blood shows that I am positive for another marker, HER2.  That is also good news.  If the GD2 doesn't work they can try the HER2 instead.  She believes a trial against osteosarcoma using HER2 will begin within a few months.

In the meantime, I haven't had chemotherapy for almost three weeks now and boy do I feel good.  I just love how I feel when I'm not being poisoned.  Chemo will begin again on Friday so I will try to enjoy feeling human again even if it is only for a few days.

If joy had a face, this would be it.

This last week we had most of our children with us.  Seth had flown out to go to his cousins ring ceremony.  Shanelle, Mike and Vivian came to bring our car back from Oregon.  That was a clever way of us to get them to come.  Sunday we took up the entire row with our family.  That made me happy.  It was like the good old days.  They have all gone home now but it was nice while it lasted.